Statement by Research!America President and CEO Mary Woolley on the Accelerate Biomedical Research Act
Research!America applauds Senator Tom Harkin for taking bold, decisive action to heal fissures in our nation’s research pipeline with legislation that will strengthen the National Institutes of Health (NIH) budget over the next six years. The Accelerate Biomedical Research Act will establish a pathway for sustained growth in the NIH budget. That budget has remained virtually stagnant over the last decade, jeopardizing promising research to combat disease and deflating the aspirations of early career scientists. NIH-funded research fuels the development of lifesaving therapies and treatments, and creates opportunities for public-private partnerships to better understand Alzheimer’s, cancer, heart disease and other major health threats here and abroad.
Senator Harkin and other congressional leaders recognize the potential of innovative research, but it is Senator Harkin who is taking the lead at a time when too many elected officials appear to have taken their eyes off the ball with our global leadership in science and technology at risk. China and other countries are aggressively increasing their research and development investments, luring scientists to their shores and challenging our dominance in medical research and innovation. According to polling commissioned by Research!America, a majority of Americans are skeptical that the U.S. will maintain its pre-eminence in science by the year 2020, and many policy experts agree. We urge Congress to support the Accelerate Biomedical Research Act to improve the health of Americans and ensure our global competitiveness.
Medical Research: It’s about you and me
Research!America’s newest fact sheet series highlights the personal stories of medical research and the importance of increasing the NIH budget in FY15. We hope you will share these fact sheets with your representatives or congressional candidates, or take it with you on Hill or in-district visits. No one who reads these stories can doubt the significance of medical progress. A stronger investment in research is needed now more than ever!
Here are their stories:
- John Hudson Dilgen, Epidermolysis Bullosa
- Steve DeWitte, Parkinson’s disease
- Victor Medina, Traumatic Brain Injury
- Carrie Scott, Multiple Sclerosis
- Max Hasenauer, X-linked agammaglobulinemia
- Michael Moskowitz, non-Hodgkin’s lymphoma
- Averl Anderson, Breast Cancer
- Paul D’Addario, Retinitis pigmentosa
What new discoveries are we delaying and missing when we slow the pace of medical and health research?
We’ve made progress. But the funding to sustain it is eroding.
Working Together for Research
By Margaret Foti, PhD, MD (h.c.), Chief Executive Officer, American Association for Cancer Research
Each year, the American Association for Cancer Research (AACR) is pleased to support and highlight May as National Cancer Research Month. Throughout this special month, the AACR celebrates the accomplishments of the scientific community, advocates for funding increases for the National Institutes of Health (NIH) and the National Cancer Institute (NCI), and spotlights the need for continued improvements in patient care.
There’s no doubt that tremendous progress has been made against cancer. People who have been diagnosed with cancer are living longer today than ever before. The five-year survival rate among adults who have had cancer (all cancers combined) is about 68 percent—an increase of 19 percent since 1975. For all childhood cancers combined, the five-year survival rate is 83 percent, an increase of 30 percent since 1975.
But much remains to be done. Almost 1,600 people in the United States die from cancer every day. The toll in medical costs, lost productivity, and human suffering is immense and will in fact grow as the “baby boomer” generation gets older. Continue reading →
NIH and Lacks Family Reach Agreement on Controlled Access to Data
After more than four months of discussions, the National Institutes of Health and the family of Henrietta Lacks have reached a mutual agreement that will serve to both advance medical research and protect Lacks’ descendants.
In 1951, Lacks died of cervical cancer at Johns Hopkins Hospital in Baltimore. Before her death, doctors removed some of her tumor cells. And something amazing happened. Her cells had a property not seen before: They could grow in a lab. Those cells, now called HeLa cell, were everlasting.
“We have agreed that NIH-supported researchers will deposit any DNA sequences derived from HeLa cells into NIH’s dbGAP database, and have established a process through which researchers can request controlled access to that data. Such requests will be reviewed by a working group consisting of physicians, scientists, a bioethicist and two members of the Lacks family,” said Francis Collins, MD, PhD, NIH director.
The HeLa cells have been the subject of more than 74,000 studies; they have served as the foundation for developing vaccines and provided insights into cell biology, in vitro fertilization and cancer.
Cuts to NIH research squeezes young scientists out
Op-ed by Abigail Schindler, PhD, postdoctoral fellow at the University of Washington, Department of Psychiatry and Behavioral Sciences and co-leader of the Seattle Forum on Science Ethics and Policy published in The Seattle Times.
When I think about not being a scientist anymore my heart hurts. But sadly, due to continued budget cuts to biomedical research, within the next few years that is most likely exactly what I will be — no longer a scientist, no longer a researcher searching for cures for disease.
And I am not alone. The number of young scientists being forced out of basic biomedical research in the United States is increasing at an alarming rate, and when this next generation of scientists leaves, it is not coming back.
Like me, these are early career scientists trained in the United States by U.S. tax dollars. We are scientists whose life goal has been to one day have our own research program at an academic institution committed to the search for breakthroughs and cures. Yet because of these budget cuts, catchphrases such as the “brain drain” are proving true. This is a bad omen for U.S. global leadership in biomedical research and the future health and wellness of our nation.
The National Institutes of Health (NIH) is the nation’s premier biomedical research agency and the leading supporter of biomedical research in the world. Despite numerous public polls showing strong support among Americans for government funding of basic biomedical research, NIH’s budget was cut by $1.5 billion this year, or 5 percent, from $31 billion. Continue reading →
Budget sequestration could soon cost us in lives
An excerpt of an op-ed by Robert I. Field, PhD, JD, MPH, professor of the Earle Mack School of Law & Drexel School of Public Health published in Philly.com.
Robert I. Field, PhD, JD, MPH
What do we get when Congress cuts federal spending across-the-board? Does it bring lower taxes, smaller deficits, and less bureaucracy?
How about worse health care, less medical innovation, and lost lives?
The budget sequester that Congress enacted in 2011 began to take effect this year with spending cuts for most federal programs. So far, the majority of Americans have seen little change. Some may even applaud the idea of forcing the federal government to make due with less.
But the sequester is about to exert an especially sinister effect that lies just outside of public view. It could cripple medical research.
The National Institutes of Health is the largest single source of biomedical research funding in the world. It supports work at most universities in the United States and at many around the world.
That’s not just important to the physicians and researchers who work at those institutions. It’s vitally important to everyone. NIH funding stands behind the development of almost every major drug that has emerged over the past 50 years. You can see the impact of this agency every time you open your medicine cabinet. It has also brought us countless medical devices and procedures. And led to 83 Nobel prizes. Continue reading →
Major Study Finds That Overall Population Health in U.S. Has Improved, But Has Not Kept Pace With Other Wealthy Nations
Americans are living longer lives but are spending more years afflicted with major illnesses such as Alzheimer’s disease, kidney disease, and mental and behavioral disorders, according to a study published online in the Journal of American Medical Association. Researchers show that the overall population health improved in the U.S. in the last few decades, however, illness and chronic disability now account for nearly half of the country’s health burden.
The objective of the study was to measure the burden of diseases, injuries and leading risk factors in the U.S. from 1990 to 2010 and to compare these measurements with the 34 countries in the Organisation for Economic Co-operation and Development (OECD). The researchers found that U.S. life expectancy for both sexes increased from 75.2 years in 1990 to 78.2 years in 2010; during the same period, healthy life expectancy increased from 65.8 years to 68.1 years. During this time period, improvements in population health in the U.S. did not keep pace with other wealthy nations. The authors note that the U.S. spends the most per capita on health care across all countries yet lags behind other high-income countries for life expectancy and many other health outcome measures.
In a recent national public opinion poll, two-thirds of Americans (66%) say that their quality of life has been improved by medical research and that the cost of health care is the most critical health issue in America today. We must continue to urge policy makers about the importance of funding medical research if we want to live healthier – not just longer – lives.
The full study is available online: http://jama.jamanetwork.com/article.aspx?articleid=1710486
Editor’s Note: This study is supported in part by the Intramural Program of the National Institutes of Health, the National Institute of Environmental Health Sciences, and in part by the Bill and Melinda Gates Foundation.
Guest Post: LFA’s National Lupus Advocacy Summit
By Sara J. Chang, Government Relations and Public Policy Manager, Lupus Foundation of America.
“We are lupus activists, and we’re here to tell our stories and make our voices heard throughout Capitol Hill!” That was the empowerment felt during the Lupus Foundation of America’s biennial National Lupus Advocacy Summit held June 24-25, 2013. It is always an energizing and rewarding event for our lupus activists and 2013 was no exception. We had meetings with 176 Congressional offices, involving 220 people representing 30 states. Our online activists also came out in force, generating 3,503 emails and phone calls to Congress during the two-day event!
We took to Capitol Hill to urge Congress to support funding the National Institutes of Health (NIH) at $32 billion and to pass H.R. 460, the Patients’ Access to Treatments Act (PATA), to ensure access to treatments for lupus and other chronic conditions. Lupus activists reinforced their request when they presented more than 30,000 petition signatures collected from individuals calling upon Congress to expand the medical research effort on lupus. (You can still sign the online petition at www.cruelmystery.org.) Continue reading →
Genome: Unlocking Life’s Code
Photo credit: Smithsonian
This month “Genome: Unlocking Life’s Code,” first state-of-the-art exhibition about genome science, opened at the Museum of Natural History in partnership with the National Human Genome Research Institute (NHGRI). The exhibit boasts cutting-edge interactives, 3D models, custom animations and engaging videos of real-life stories. According to Dr. Eric D. Green, director of the National Human Genome Research Institute (NHGRI), one of the 27 institutes and centers that make up the National Institutes of Health (NIH), “This exhibition reflects a remarkably productive collaboration between components of two scientific icons of the U.S. government – the Smithsonian Institution and the National Institutes of Health.”
The Human Genome Project (HGP), which is celebrating its 10th anniversary, has helped researchers gain a better understanding of genes, opening pathways to new innovations for health and technology. Before the project, researchers knew the genetic basis of about 60 rare genetic diseases; when it ended the number had jumped to 2,200. Today, with research energized by the HGP, we know the genomic basis of nearly 5,000 rare disorders, according to the exhibits website. Continue reading →
Research!America Blog 